Category: heart transplant

Aye Write! 2021

~ Angela Hughes ~ Leave a comment

The email asked if I would be interested in taking part in this year’s Aye Write! book festival, to talk about My Heart’s Content. I read it three times to be sure.

What you grinning at? Paul asked. I read him the email.

Well are you interested? he said. I nodded vigorously and asked if he wanted a cup of tea. He raised an eyebrow.

I’m playing it cool, I said. Don’t want to appear too eager.

Half way to the kitchen, which in our flat is around 10 steps, my coolness, such as it is, dissipated and I rushed back to send my reply, fully expecting to see a message telling me my window for responding had expired and I’d missed the opportunity. Or dreamed it.

Let me set my excitement in context. For those of you who aren’t aware, Aye Write! is Glasgow’s annual book festival. As with the city in which it’s based, it is big, bold and friendly. And this year, it was online, which means you could buy a pass for the whole festival and watch at your convenience.

There were sessions about dealing with grief, and the healing power of nature. Rock stars talked about memoirs and authors talked about fiction being the new rock n roll. There were authors talking politics and politicians, including Scotland’s First Minister Nicola Sturgeon, talking books.

Participating authors included big hitters Andrew O’Hagan, Douglas Stuart and Maggie O’Farrell, alongside those less well known but equally brilliant, such as Helen McClory, Ruth Thomas and Jenni Fagan. And there were those just starting out, like me!

Scottish Debuts: Aye Write! Festival 2021

The Scottish Debuts, of which I was one, opened the festival, with a flurry of Tweets and a dance around the living room (in our house at least). The event was pre-recorded, which given my nerves, was just as well. We were each allotted a few minutes to do with what we wanted – read from our book, talk about our writing, grin inanely. I opted for all three.

And so, on Friday 14 May, there I was, reading from the book I had written, to an invisible audience (which would have included my mum, if she had been able to get the link to work on time) as part of one of the UK’s biggest book festivals.

Just another ordinary day then: aye right!

*Although the main Aye Write! festival is now over, you can watch the events online for up to three weeks from the date of their release. Check out Glasgow Life TV to find out what’s available.

The Scottish Debuts event is free and still available to watch for a couple more days.

To buy a copy of My Heart’s Content: A Journey to Transplant, visit Liminal Ink.

Before we bring in the new

~ Angela Hughes ~ Leave a comment

The last day of 2020. It’s been tough for most people, illness, financial insecurity, loneliness, fear. Loss of loved ones and being unable to say goodbye.

As hard as it is not to focus on all the difficulties of 2020, I wanted to reflect on the good that came out of it. The sense of community. Putting the welfare of others before ourselves. The imagination and ingenuity used to bring people together safely. The sharing and the hope.

For Paul and I we have a lot to be thankful for: though many of our friends were affected by the virus, we lost only one member from our extended family (although still one too many). Both sets of parents stayed well, despite an operation and several hospital trips. We had regular work and thanks in particular to our friends Gail and Shirish, we were never short of food.

We also had space and quiet to finally explore the experience of my transplant: the impact it had on both of us. Part of that was the publishing of my book, which opened up feelings we’d locked away, perhaps for the better at the time. Through talking about what happened we realised there were emotions deeply buried under layers of well-rehearsed anecdotes, used to divert attention from things too painful to contemplate. 

For several weeks during the production of my book, my sleep was interrupted by the image of the theatre doors, immediately before I was wheeled in for my operation, against the ghostly echo of Paul’s footsteps walking away. I would wake, shaking, heart racing in the remnants of a dream where I’d been abandoned, yet again, by Paul or my family or my closest friends. A skin-crawling fear of being ignored. Unseen. Of no-one hearing me. And on its coat-tails, guilt. Thoughts of those whose reality renders my worst fears insignificant. Of my donor and their family.

As with most things, time and talking soothed my fizzled body and mind and here, at the endpoint of a year like no other, I wanted to acknowledge, in writing and from my own perspective, the incredible resilience and kindness of those around me. For friends who wrote or called, who sent cards and texts (and penguins). Of neighbours who shared food and laughter. Of all those who gave so generously and supported so effusively the launch of My Heart’s Content. And family, of course family. Family who were there and are there. Always.

There’s no doubt the shadow of 2020 will reach long into the future, for many reasons and one in particular. But for me it was the year I published my first book. The year Paul and I fully realised the extent of our community. The year my mum began to finally recover. The year I gave my first interview as an author. A year where people actually read my words and liked them, loved them in some cases, and graciously shared their thoughts with me. A year which cemented old friendships, found new ones and reconnected with some who had temporarily gone astray.

For me 2020 was the year I transitioned to being an author. The one thing I’d always craved. A childhood dream fulfilled. The year I finally found my home.

HAPPY NEW YEAR!

Bring on 2021.

If you haven’t yet read My Heart’s Content and would like to do so, it’s available at: Liminal Ink

*Cover image for My Heart’s Content by Laura Donald

The joy of firsts

~ Angela Hughes ~ Leave a comment

In a car, outside a hospital, on a water-logged autumn morning, I prepare to answer the questions sent to me for an interview in SNACK magazine. They arrived in my email inbox the evening before. Throughout the night I mulled my answers between snatches of sleep in the midst of a storm that exfoliated the root of our ancient camper van. The camper van and hospital belong to another story; the questions are about my book, the writing of it, my transplant experience and my relationship with Paul. This is my first interview as an author. My first chance to talk about my writing. With a wave to the parking attendant (I’m a regular), I slide into the passenger seat and pull out my laptop to begin.

SNACK magazine cover

Apprehension stalls my first sentence. Start, delete. Start, delete. I know I’m over-thinking. It’s not like I don’t know the answers: I wrote the book and what’s more, I lived the experience. It’s my story. Breathe. Start again. This time I let go and write as I would talk. And guess what, it’s fun.

Since my transplant I’ve told and retold my story so many times I’ve lost count. Mostly it’s to friends, family, work mates. Occasionally it’s to the press or other media. I’ve even performed parts of it, as recounted in an earlier blog. What I haven’t done much of is talked about my writing. About what or who inspires me. How it feels to reveal details of my experience, my relationship, on the page. To do so was exhilarating. Turns out I had a lot to say. Too much. No matter, I could save the overspill of words for a podcast I’d been invited to take part in a few days, this time for the Scots Whay Hae!, a website dedicated to Scottish culture.

For the podcast it’s an evening and it’s with Paul, in our living room, via Zoom. It’s also the same interviewer, Alistair Braidwood. I’m familiar with SWH! and have listened to several previous podcasts. So why the frizzle of nerves? The sensation of standing on the banks of a fast flowing river? I’ve checked to make sure I haven’t spilled anything on my shirt and my hair isn’t sticking up, yet (private joke for a few of my university friends). Inside I know why. It’s the fear of jumbling my words in the school play, of dropping the ball at third base of rounders, of tripping over at sports day, of forgetting my steps at the end of year dance show. The potential to misspeak or dry up completely.

Scots Whay Hae! website

The good news is, it was, as you’ve probably guessed, fine. More than, in fact. As far as I’m aware, I didn’t speak out of turn or inappropriately, laugh too loudly (well perhaps a little but it’s my natural laugh) or offend anyone. In fact, as with the written interview, after a wobbly start, I enjoyed the whole experience. It helps that Alistair was warm and encouraging, the questions were interesting, and Paul was there to take the slack, or surreptitiously poke me to remind me to slow the pace.

And as if that weren’t enough firsts, I also received feedback from three readers with no connection to my story. And they loved the book. One said it was the best book she’d read all year, another talked about how it resonated with her emotionally, the last about how she had been unable to put it down. What a remarkable privilege to write something and have it read and enjoyed by others.

These feelings, all of them, I hope they never go away.

And if you’re interested, below are the links to the SWH! podcast and the interview in SNACK magazine.

Scots Whay Hae! https://scotswhayhae.com

SNACK magazine https://snackmag.co.uk/read-this-months-magazine

Organ donation: why it matters

~ Angela Hughes ~ Leave a comment

This week, 7 – 13 September 2020, is organ donation week.

On Christmas Day 2013, I received the most incredible gift; a new heart. In order for that to happen, my donor made the decision to allow their organs to be used after their death. A decision they would have taken when they were fit and well. Their family agreed to honour that decision on Christmas Eve when they were neck-deep in grief. Their kindness and generosity of spirit saved my life. It is something neither I nor my family and friends will ever forget and for which we remain forever grateful.

In my family we are doubly grateful. I’m not the first to be saved through heart transplantation. Over a decade earlier my father received a new heart, his at Easter. We consider ourselves an extraordinarily lucky family.

Nothing can prepare you for the sheer magnitude of being told you need a heart transplant. The idea of my living, beating (albeit not that well) heart being cut out of my body and replaced with that of another, was way too much for me to contemplate for any length of time (still is). The awareness that in order for me to have a chance of survival, to have a future, someone else was denied theirs. It never leaves me.

The best way for me to honour the life of my donor is to live mine to the very best of my ability. Of course there will always be time when I get stressed, or annoyed, or short-tempered, or down. There are days when I feel fat, or my hair annoys me, or I can’t find anything to wear. For a while I struggled with these feelings; believed I was somehow doing a disservice to the memory of my donor. For a time I put myself under too much pressure to be happy all the time. But not anymore. Now I accept all feelings as being part of who I am. The trick is not to dwell and to keep moving forwards.

In March next year, the organ donation system in Scotland is due to change to a soft opt out. Instead of signing up to be an organ donor, the onus will be on people who do not want to donate their organs to opt out. The hope is more organs will be available. I used to shudder at the reference to ‘organs’ and not to the person. Organ donation will always be an emotive issue. The reality is, the living, breathing person the potential donor once was, is no more. They live on in memories and shared recollections, not in body parts they no longer have a use for. I understand now why it makes sense to separate the personal from the medical.

When I first had my transplant the thought of my donor’s family and friends grieving for their loss haunted me. I struggled with whether I was ‘worth’ my new heart. Over time, and with the help of members of my medical team and the transplant clinic at the Golden Jubilee Hospital, I came to terms with the fact that my donor’s death had nothing to do with me. It happened regardless of my need for a new heart. The decision of my donor to sign the organ donation register was what connected us. I think of that often and it makes me smile.

“… heart transplantation is the closest thing to a miracle.”

Last week, Paul and I premiered a video we made about our transplant journey with the Public Health, Private Illness conference. If you would like to watch it, you can do so using the link at the bottom of the page. The video is personal and it was difficult for both of us to relive our experience in this way. We did it because we feel strongly that we should play our part in raising awareness of heart transplantation and organ donation.

For me, heart transplantation is the closest thing to a miracle.

Everybody who receives a heart transplant would die without one.

Paul and I recorded the video below to share a wee snippet of our story and to help raise awareness of organ donation. It’s about 15 minutes long.

If you aren’t already, please consider signing up to be an organ donor.

In Scotland: https://www.organdonation.nhs.uk/uk-laws/organ-donation-law-in-scotland/

For the rest of the UK: https://www.organdonation.nhs.uk

Almost there

~ Angela Hughes ~ 1 Comment

The few weeks since the end of the Kickstarter have been a whirlwind of tweaks, layouts and design decisions. And now it’s all done. The book cover design is finalised, the manuscript is typeset and print ready, and the e-book versions are complete. All that’s left is to send everything to the printer and wait for the book to arrive. The real-life, proper book.

Remember how it felt as a child on Christmas Eve, waiting for Santa, body tingled, eyes screwed shut, sleep elusive, willing time to go faster? That’s a fraction of the excitement simmering inside me. My Heart’s Content was a labour of love; an exorcism. It wasn’t my planned first book, nor even my preferred genre. It’s the one I couldn’t not write (double negative intentional and necessary). The end was a long breath out.

The prospect of writing memoir fascinated me – not so much deciding what to include but rather how to present it. When I arrived at the format of a day per chapter (I know, not exactly ground-breaking and yet it took months to get there), it freed me to be more creative with the content. With little experience of biographical writing, I began by reading other memoirs, across many subjects. For several weeks I inhabited the genre: from brain tumours to birds of prey. What struck me was the stylistic crossover between biography and fiction. The weaving of a story around a moment in time. None of the dry, factual text I had imagined but instead a journey into another life, a glimpse of a different world. A revelation.

“There is another side of writing a memoir for which I wasn’t prepared.”

There is another side of writing a memoir for which I wasn’t prepared. The emotional toll. Not the writing, which was almost cathartic, not even the reading of the story over and over, although there were moments where triggered memories were almost too much to bear. What I hadn’t expected was the underlying fear of those unknown readers. People with whom I have no connection, who don’t know my story, who have no vested interest in me and don’t need to be careful with their comments. What if these people don’t like it? Or actively dislike it? If it were fiction, it would still hurt but it wouldn’t be my story. I knew releasing a book into the wild would be tough but this extra dimension …

And yet.

Whatever the readers think, I’m proud of my book. I’m proud of Paul and my friends and family who helped me through my experience. I’m proud of our NHS and the care and dedication of the staff in the transplant unit of the Golden Jubilee Hospital. I’m proud of the team of professionals who proofed, edited, typeset, designed, primped and preened my book ready for its prom night.

My book’s all grown up. Time to make its own way in the world. All I can do now is let it go.

* My Heart’s Content is launched on Thursday 22 October. Backers from the Kickstarter campaign will receive their copies as soon as they are ready.